Neulasta concerns Please Help!
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July 17, 2009 at 1:10 am #29646louiseSpectator
I am also on Anthem/BC/BS through my husband’s employment, so even if I have to quit my job, I should still have my insurance without COBRA. That is a real relief and concern. They have been very good to me, though I have had to push pretty hard to get some things covered. I have learned a few things about my insurance company. I can file an appeal on my own behalf, and then the insurance company contacts the Doctor if more medical info is needed or needs to be confirmed. The insurance company seems to have a policy of denying anything questionable on first and sometimes second claim, but they often yield to persistance. One reason they try to say treatment is experimental is because our cancer is so rare and so scarcely studied compared to other diseases that the medical community has not even had a standard protocal for treating it. Few people would deny radiation as a treatment for cancer, but the insurance company tried to say that my radiation was experimental because it was not on a protocal for cc. Both my primary oncologist and my radiation oncologist assured me that the bill for my radiation was to be negotiated between the hospital and the insurance company; I would not be responsible for it. I am well pleased with my health care team.
My concern about nationalized medicine stems from what I saw when my husband was in the air force. Each doctor seemed to be under time pressure, as appointment times were overbooked. Our appointments were typically with a department, not necessarily a specific doctor. If you did not arrive with your list of questions written out, they didn’t have time for chit-chat while you tried to recall what you wanted to ask, and it really helped if everyone did the kind of learning/asking questions before they saw the doctor so we knew what to ask. Treatments were readily available and we never even saw a bill (that’s the part I miss), but I saw people who did not get the care they should have had simply because they did not know what or how to ask. So in my mind, the people who need healthcare help most still may not get what they need unless the role of advocate becomes huge.
July 15, 2009 at 8:57 pm #29645marylloydSpectatorMy husband has had MRIs every three months up until March with Gov’t sponsored healthcare. He has never been denied anything and I don’t expect that to change if we get a new health care program in place. I actually expect things to get worse if something isn’t done as insurance companies are struggling like everyone in business. Mary
July 15, 2009 at 3:15 pm #29644lisaSpectatorI am on Anthem/Blue Cross/Blue shield. My complaint is that COBRA is really expensive, but maybe it is just because I’m not used to paying my portion ofo the premium. I have not been denied any treatments so far. My yearly deductible is $2000.00. My co-pays are $5/$10 for precriptions.
Therefore I am also very hesitant to get on to the government run health care bandwagon. I too am afraid that care will have to be rationed. I have CT scans every three months. Pretty sure that won’t happen under Obamacare.
As Jamie said, it would be more cost effective and a more efficient use of scarse gov’t resources to just let those of us with poor prognosises just die. But we are not statistics. Several of us have lived years with radiation/chemo treatments. I’m going to be a 2 year survivor next month. If I hadn’t had those treatments, and hosptializations when I got infections, I wouldn’t be here right now.
My healthcare team – oncologists, gastroenterologists, and most especially nurses have provided excellent care these past 2 years, and my hat’s off to them.
July 14, 2009 at 10:36 pm #29643marylloydSpectatorJamie,
My husband was uninsured when diagnosed and because he was given permanent disability status immediately was able to be covered by Ohio’s Medicaid disability program. He is now on Medicare. He has never been denied or had to fight for a single treatment. In fact his treatment was much different than most indiviuals on this board and probably would have been denied as not being proven effective by a private insurer.I feel he may not be alive tody if he had private insurance rather than Medicaid. I have personally had nothing but trouble dealing with claims from private insurance companies. The few times I have had medical issues have resulted in my having to file three complaints to my state insurance commission to get the companies to pay the bills they were responsible for. I think people are being fed a lot of propaganda as far as the ineffectiveness of gov’t programs. My son has had Tricare through the Army and both sets of parents have had Medicare with absolutely no complaints or problems. Don’t be afraid. I actually believe more money will be available because right now healthcare is being run as a for profit business and that is not right. MaryJuly 14, 2009 at 9:45 pm #29642marionsModeratorJamie
July 14, 2009 at 6:05 pm #29641jamie-dMemberMarion;
My great fear with the talk of the new government run health care is that those of us with rare cancers will not be able to get treatment. It wont be cost effective. I was given statistics that chemo didn’t really work on cc, only 30% had any results and that was just keeping it from growing as fast. That was at Mayo. Obviously, some of us have had results and have seen shrinkage and have outlived predictions. If the bean counters feel that we are not worth the cost, we won’t be able to get it. As a nurse, i have seen how the administrators are often only interested in the bottom line, not quiality of care. If these are the type of people in change I am afraid. We do not have the numbers that other cancers do or the media involvement. We’ll be the first ones cut I’m afraid. And we can forget any new experimental treatments. Just my little rant and fears for what may come. God Bless,
JamieJuly 14, 2009 at 5:25 pm #29640marionsModeratorJamie… great response, and thanks for the offer to help. Basically, Sara, Rick, and Stacie have set up this site to include the information mentioned. Let’s await all other comments and we will go from there.
On another note…..I am hoping for the new health care system to address the issues mentioned by you Jamie….deductibles out of reach for the insured and a major reason for bankruptcies in this country.July 14, 2009 at 5:23 pm #29639marionsModeratorJamie… great response, and thanks for the offer to help. Basically, Sara, Rick, and Stacie have set up this site to include the information mentioned. Let’s await all other comments and we will go from there.
On another note…..I am hoping for the new health care system to address the issues mentioned by you Jamie….deductables out of reach for the insured and a major reason for bankrupcties in this country.July 14, 2009 at 4:49 pm #29638jamie-dMemberMarion;
I think it sounds like a great idea. I have not had a problem so far with the insurance actually denying anything, it is just what they charge me, my deductible keeps going way up each year and my monthly premium is getting way too high. Since we are on an individual policy and I can’t get insurance from anyone else now, we are at their mercy. I never know however if something will be approved or not. I think if we could get the board to start a thread for your idea, with appropriate subgroups, ie, chemodrugs/medicines, radiology options/ surgical procedures, etc it would make it easier to both fill in and then collect data. Even before it gets put together someone could check the area they are having problems with denial and at least get some info to back their claims. My thoughts would be that we should include type of insurance you have, treatment received, and maybe where you have gotten treatment. I think that maybe some insurances are less likely to deny if they know a hospital uses the treatment regularly and if the Docs are willing to appeal for their patients. These are just some thoughts off the top of my head. I would be happy to help as much as I can. God Bless,
JamieJuly 14, 2009 at 2:33 pm #29637marionsModeratorInsurance approval for the treatment of CC has been a problem all along. I don
July 14, 2009 at 3:40 am #29636violarobMemberNeulasta: I had my first injection of Neulasta last week, one day after chemo (Avastin + gemcitabine + cisplatin). My choice was either accept the Neulasta injection, or skip chemo for 2 weeks. I wanted to stay on schedule, so I took the Neulasta.
I had a low-grade fever and mild body aches for 2 days following the injection. Not bad at all, just took it easy for a couple of days. White count rebounded into the normal range and stayed there. (My platelets were not as cooperative…)
I would say to anyone who could benefit from it, to give it a try at least once to see how you tolerate it. I think that if it allows you to stay on your chemo regimen and keep fighting, it is worth it as long as the side-effects are tolerable.
Violarob in Texas
July 14, 2009 at 2:10 am #29635lisaSpectatorI feel your pain, Jaimie! It’s either a slap in the face or a kick in the butt. The whole financial thing adds insult to injury. I get sooo annoyed at the Susan B. Komen Foundation and other foundations specifically for breast cancer, because it is as though other cancers don’t exist for them. Yet we have the same problems, if not more, than people fighting breast cancer. Hell, we have to be on chemo the rest of our lives! I’d be HAPPY to lose a breast or two if it meant that my cancer would be gone. But we have to lose a LIVER to get rid of our cancer. Which of course means DEATH if a transplant is not available.
Vent over.
July 14, 2009 at 1:23 am #29634lainySpectatorJamie you just vent away with Kris. We have broad shoulders here. Wish things would run easier for everyone. You are so right there is enough to deal with as it is. Guess we are all a lot stronger than we think we are, yes? Not sure many could handle what this Board does. SO KUDOS to us at CC.ORG!!!!
July 14, 2009 at 12:28 am #29633jamie-dMemberWell here’s my update. No real problem with the Neulasta, some pain, but nothing I couldnt tolerate. Raised my WBC to 8.8 the following week, down to 5.5 the next week when I went for chemo. Went to my local clinic for Neupogen injections Tues-Fri last week. Had a problem with my arm and nurse had me see a DR on Fri, ended up with ultrasound to rule out blood clots and now on antibiotic for cellulitis. Did WBC it was at 4.3. Today went back to Mayo was able to get 2nd dose of Gemzar, WBC was 3.6. So at least it is working enough that I could get the chemo but not keeping it up as well as I would have thought. Now I checked with the pharmacy to see if insurance will cover it if I self inject from now on. They will cover a part of it but I just found out for 2 weeks my copay will be $461!!
I told my husband I feel like giving up. Good grief. Now I am worried how much I will have to pay for last weeks injections at the clinic and I am set up to get the rest of this week at the clinic. There is always something it seems. It’s not like we don’t have enough to worry about/fight with this darn cancer, but then we have battles with insurance, poor nursing care like Kris got, increasing costs for the insurance and copays, or cost of Cobra being so high after someone has to stop working. Ok Lord, we, those of us fighting this rare cancer that plays dirty and fights unfairly need a break!! Sorry felt the need for a little venting session too. Hope everyone is having a better day than me today . Tomorrow will be better.
God Bless,
JamieJune 24, 2009 at 5:03 pm #29632jamie-dMemberWell, I got the shot yesterday. No problems so far other than a little pain at the injection site. I’ve talked to a couple of other people and they say the bone pain shows up after a couple of days. I’ll keep you posted. I’m glad next time I’ll get the Neupogen. It sounds like much milder side effects. Thanks again for all your support and information. It has really helped.
God Bless,
Jamie -
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